I am sharing my story in support of the CRPD campaign: Absolute Prohibition of Involuntary Commitment and Forced Treatment.
This campaign is of utmost importance. Treatment and commitment carried
out by force is torture, and must be abolished immediately. For
psychiatric ‘help’ to happen by force is a paradox and makes absolutely
no sense. It can destroy people’s personality and self-confidence. It
can lead, in the long run, to physical and psychological disability –
and unfortunately, as I know only too well, it can also result in sudden
death.

I have been in very close contact with the Danish psychiatric
treatment system. My dear daughter Luise got caught in this ‘helping
system’ by mistake, but she didn’t make it out alive. I’m sad to say I
later discovered that the way Luise was treated was more the rule than
the exception. After writing a book about Luise and the psychiatric
system, Dear Luise: A story of power and powerlessness in Denmark’s psychiatric care system,
people from all corners of the world contacted me to say that Luise’s
story could have been their own or their loved one’s story.

As a leader of the Danish association Dead in Psychiatric Care,
I am constantly in contact with desperate people who have been
committed or who have experienced some kind of forced treatment. They
all talk about the tremendous amount of psychotropics they are forced to
take. They feel powerless when they complain about horrible side
effects and are told in response that the disease has developed and the
dose has to be increased. I hear about the smug certainty of some mental
health professionals, both doctors and caregivers, and the concomitant
dehumanization of their patients through indifference, harassment,
coercion and the use of force. Through my experience with my dear Luise,
I saw this cold and dangerous treatment world.

Luise died in 2005 when her body and mind could not tolerate the
inhumane treatment anymore. After her death, I got access to the
hospital records. Reading Luise’s 600-page chart was a wretched
experience. It presents an impersonal diagnosis, with signs of coercion,
both direct and indirect, permeating the stack of chart notes. Luise
wanted me to help her, but the psychiatrists didn’t want to hear my
opinion. They believed that they knew better. So I watched powerlessly
as Luise deteriorated both physically and psychologically. I witnessed
arrogance and dishonesty, repeated misdiagnoses, professional collusion,
missing official records, and falsified hospital charts.

Luise started down this path in 1992 at the age of 18. She was
supposed to have a psychiatric examination without medication, however,
she was heavily medicated from the very minute she set foot in the
hospital. After eight days she was close to dying from medication
poisoning. That was in August, 1992. In October of 1992, she was still
deeply marked by the poisoning. I have no doubt that she suffered brain
damage from this. Instead of treating this injury, the psychiatrists
wanted to give her more medication.

Luise said no. She argued that the psychotropics had made her very
ill, which was true. The psychiatrists interpreted her arguments as a
sign of her illness. Shortly after that, the mandated medication began –
administered by a syringe – along with the periodic use of belt
restraints.

She fought for two months against the terrible drugs. The staff
always won this battle, of course. They used manpower, the belt, and the
syringe.

At a certain point, Luise gave up fighting. She was broken. My heart
bleeds when I read the chart from November 11, 1992. Two and a half
months after she first contacted the psychiatric ward for help, her
chart reads, “Today the patient offers no physical resistance but is
anxious about being medicated and holds hands (the psychiatrists), and
afterward, she is somewhat tearful.”

After reading the chart notes, I realize that coercion, both overt
and covert, plays a much greater role in treatment than I had ever
imagined.

Initially, Luise fought back, which resulted in long-term coercive
measures. I can see that eventually just the threat of forcible measures
was enough to make Luise give in. It’s the same story I hear from many
of the people who contact me. At a certain point, everybody gives up on
fighting back.

July 14th, 2005, around four p.m., was the last time Luise
experienced this act of cruelty. She was involuntarily committed to a
closed psychiatric ward. She had a psychotropic injected. That was on
top of the four other antipsychotics she was already on. On the 15th,
during the night, she was walking around as usual (akathisia). A bump
was heard. At 5 a.m. Luise was declared dead. The doctor’s attempt at
resuscitation was in vain. My Luise was gone forever.

The hospital chart, written not many hours before she died: “The
patient was persuaded today to take prolonged-release medicine.” Then a
few words about the dose and about how she was feeling well and could be
moved to an open ward the next day.

Luise did not want me visiting her, that afternoon of July 14. This
was unusual, so I called the ward and was told that she was doing fine
and she just did not want to see me. I asked if there had been a change
in her medication ― I dreaded the injection the doctor had talked about,
which I said would be Luise’s death. The woman on the telephone
answered that, for the best of Luise, they had decided to inform me
about any medication changes only once a week, so I could find out about
this the following Thursday. That’s when I really got scared. Just a
few words in the chart about such an important decision as giving a new
drug by way of depot injection.

Medical law requires that a patient’s chart must record what
information the patient has received about a new product, and what the
patient has articulated about it. Nothing was noted in her chart. No
informed consent. Luise would have done anything to avoid the syringe.
So the sentence “The patient was persuaded today to take prolonged-release medicine”
is ominous. I’m sure she fought against getting this injection, as she
had earlier been about to die from injection with psychotropics.

The autopsy also revealed marks around her body, which the coroner
could not explain. I have no doubt that these marks stem from the staff
holding Luise down by force when she fought against getting the drug by
syringe ― the injection she died from, eight to twelve hours later.

Mental health problems are not a deadly disease. Yet many people, far
too many people, still die in psychiatric care. They die because they
are treated with far too high doses of psychotropics, often given
against their will and by force. Luise’s tragedy is far from unique in
Denmark ― or indeed any other ‘advanced’ industrialized country.

After Luise’s death, I sent a complaint to the National Agency for
Patient Rights and Complaints, and to The Patient Insurance Association.
My complaint’s headline was “Death from drug poisoning.” I named the
four different drugs she had been on, which all together was a huge
cocktail.

According to these agencies, Luise received the highest standard of specialist treatment. They wrote:

The antipsychotic medication treatment has complied with
the best professional standards. That the outcome has not been
satisfactory is due to the nature of the condition and the circumstances
that the profession’s knowledge and treatment options are limited.As stated, I believe that the risk inherent in the medication
treatment must be weighed against the sufferings Luise H.C. would have
undergone without treatment.

It is incomprehensible that Luise’s treatment was judged up to
standard, when in fact they administered psychoactive pharmaceuticals at
three times the highest recommended dose. There was no informed consent
of this polypharmacy, and nothing written in the hospital records about
her treatment in the last days of Luise’s life.

According to the UN Convention, everybody should be equal under the
law. So why is this equality not carried out in practice? And why is
nobody held responsible when the law is violated? Will we accept a
society where far too many people die from an illness that is not
deadly? Can we accept a society where forced treatment is often the
cause of severe disability?

My answer is NO. Please, STOP forced treatment. Why on earth are
psychiatrists so keen on keeping up such dangerous and degrading
treatment? I want to tell them: Please get down from your ivory tower.
Down to the real world, with real people, and stop saying that this kind
of treatment is “for the best of the patient.”